The Juravinski Cancer Centre

Information for Patients and Families

Welcome to the Joseph Brant Oncology Clinic

Patient and Family Handbook

Patient and Family Handbook – Oncology Clinic

To Our Patients and Their Families:

Our Regional Cancer Program oversees the quality and delivery of cancer care for the areas of Brant, Burlington, Haldimand, Hamilton, Niagara and Norfolk. Our cancer specialists work together with your family doctor to provide high quality, evidence-based treatment and compassionate care.

The Regional Cancer Program includes cancer services at:

Brant Community Healthcare Joseph Brant Hospital Juravinski Hospital and Cancer Centre Walker Family Cancer Centre and Niagara Health

Together we will provide you with information and support, so that you can make informed decisions and take active part in your care. Please feel free to talk with us about your health and any concerns that you may have. We welcome your questions at any time.

Your Health Care Team

Patient and Family Handbook – Oncology Clinic

Table of Contents Page

Getting to JBH ...... 1

Volunteer Drivers ...... 1

Health Care Team & Functions ...... 2

Staying in Touch With Your Family Doctor ...... 4

Benefits and Medical Expenses ...... 4

Prevent Infection ...... 4

Smoking ...... 5

What To Bring to Your Appointment ...... 5

Symptom Management ...... 6

Complementary or Alternative Therapy ...... 7

Planning Your Treatment ...... 7

Future Appointments/Appointment Changes ...... 7

Tests / Lab and Lab Results ...... 8

Cancer Treatments ...... 8

Chemotherapy ...... 9

Retail Pharmacy ...... 10

Radiation Therapy ...... 10

Clinical Trials ...... 10

Palliative Care ...... 11

Privacy / JBH Foundation ...... 12

Healthcare Team Members ...... 13

Questions/Notes ...... 14

Quick Reference Page ...... 16

Patient and Family Handbook – Oncology Clinic

Getting to JBH

You may not be able to get to your appointment on your own. This is a time to ask a family member or friend to help you. Not only can they drive you, but can be with you during your appointments. Please arrive 10-15 minutes before your appointment to allow for adequate time to register and complete “Your Symptoms Matter”

From Niagara (QEW) From Hamilton (403) From Toronto (QEW) • Follow QEW over • Exit QEW Niagara • Follow QEW Niagara Skyway Bridge from 403 • Exit at North Shore • Exit at North Shore • Exit at North Shore Blvd. Blvd. Blvd. • Turn left at lights • Turn right at lights • Turn left at lights • Turn right on • Turn right on • Turn right on Lakeshore Rd. Lakeshore Rd. Lakeshore Rd.

Parking

Current JBH Rates:  Patient pickup (to a maximum of 20 minutes) - No Charge  Half hour rate (to a maximum of 2.5 hours) - $3  Day rate (2.5 hours to 24 hours) - $16

H Pass: (for more information, please call 1-888-783-7275)  5 Day H Pass - $40  10 Day H Pass - $80  30 Day H Pass - $240

For your convenience, there are some spots designated for Cancer Clinic patients. These are located on the 2nd Floor of the Parking Garage and is directly across from the door to the Walkway into the Hospital (please note that the 2nd level of the parking garage leads directly to the first floor of the Hospital where the Clinic is located)

Volunteer Drivers

The Canadian Cancer Society offers a transportation service called Wheels of Hope to those who have no other means of getting to cancer related appointments. To support this growing program, a registration fee is charged. If you feel that you are unable to pay and have no other way to get to your appointments, there is a compassionate program available.

Patient and Family Handbook – Oncology Clinic

“New patients who live in Ontario and who register with the Wheels of Hope driver provided program will be required to pay an annual registration fee – rate of $100 or $200 depending on appointment requirements. If you are unable to pay the full registration fee, you may be offered assistance through our compassionate program which will be determined during the intake process. We are committed to ensuring that no patient is denied a ride due to their inability to pay the entire registration fee.”

For more information about this service, please call 1-800-263-6750. You can also check their website http://www.cancer.ca.

Transportation is a busy service, so please give at least 3 full business days notice.

Health Care Team

While at JBH many health care staff will be involved with your care, however your oncologist (cancer doctor) and primary nurse will coordinate your care during clinic appointments. There is space on page 14 to write down the names of your health care team. Your oncologist will work together with you and your family doctor to ensure you receive the care you need. You are the most important member of the team. We encourage you and your family to take part in your care. We also advise that you stay in touch with your family doctor regarding your treatment and overall health. As part of the Regional Cancer Program, partners of other healthcare organizations may be involved in your care.

Patient and Family Handbook – Oncology Clinic

Health Care Provider Function Chemotherapy Nurse Gives chemotherapy medication and teaches how to manage treatment related side effects Clinic Clerical Assistant Books appointments, medical tests and patient education sessions Dietitian Supports nutritional needs Palliative Nurse Practitioner Assesses and manages symptoms related to your cancer Hematologist/Oncologist Plans chemotherapy treatment and teaches patients how to take care of health and any side effects during treatment Primary Nurse Works with the oncologists and teaches patients about cancer treatment and side effect management. Social Worker Helps patients and the caregivers cope with the impact of cancer on life and provides support for emotional and financial needs Volunteers Support patients in many ways including: Finding their way around the hospital, complete symptom screening, and directs to clinic rooms

Patient and Family Handbook – Oncology Clinic

Staying in Touch with Your Family Doctor

While you are a patient of JBH, stay in touch with your family doctor about your overall health. As your JBH healthcare team treats your cancer related health problems, regular check-ups for your overall health needs need to be with your family doctor. For example, if you have diabetes or high blood pressure, continue to visit your family doctor as per your usual routine.

Benefits and Medical Expenses

For the most part, chemotherapy is covered, however there are some drugs that may not be. Applying and being approved for benefits can take time so we suggest that you start right away.

Some medical expenses, such as drug and travel costs, can be claimed on your income tax return. This handout may be helpful: “Applying for financial benefits – money concerns and cancer”. This pamphlet can be found at http://hamiltonhealthsciences.ca/documents/Patient%20Education/Benefi tsJCC-th.pdf

Listed below are websites that may be helpful:

www.servicecanada.gc.ca www.arc.rc.gc.ca http://www.cancer.ca/en/support-and-services/support-services/financial- help-on/?region=on

Prevent Infection

When you arrive at JBH, please clean your hands at the front door. Call ahead of your appointment at JBH:  if you have recently been in isolation in the hospital, or  if you have flu-like symptoms

Many of our patients have weakened immune systems. This means that their body’s defense systems are weak and that they can get infections easily.

Patient and Family Handbook – Oncology Clinic

Any family members, friends or visitors who feel unwell should not come to JBH. This includes having:  shingles, chicken pox – viral infections  a cold, flu, sore throat, runny nose  upset stomach, vomiting, diarrhea  open wounds, sores or rashes

Smoking

If I smoke, should I quit? This is a common question that many patients ask. We recommend that you quit, but realize this is difficult. There are health benefits to you from quitting. Quitting smoking can:  make your cancer treatments work better  reduce your side effects  improve your healing and overall health

If you want to quit, there is a lot of help and support available for you. You may want to talk with your healthcare team about quitting and discuss what medications may help you quit.

For support or help to stay smoke-free:

 talk with a member of your health care team  contact Smokers’ Helpline toll free at 1-877-513- 5333 or www.smokershelpline.ca

What to Bring to Your Appointments

 Health card (you will need to show this card at every appointment)

 Family doctor’s name and phone number (will be confirmed at each appointment)  Your address and phone number (will be confirmed at each appointment)  The name and phone number of at least 2 people to contact if we cannot reach you about an appointment change. To protect your privacy, we will not leave a message on an answering machine unless it identifies you by your name.

Patient and Family Handbook – Oncology Clinic

 Reading glasses, if needed

 Portable oxygen if you need it to travel to and from JBH

 Notebook, pen, this book – you may want to write down information that has been discussed  Medications (see next page)  The name of the pharmacy you use.

Symptom Management – Your Symptoms Matter

Your Symptoms Matter (formerly known as ESAS) is used to assess your symptoms and provide your team with information about how you are feeling. This tool has been developed and used across Canada and has been successful in improving the management and care for patients with cancer. You will be asked to complete Your Symptoms Matter at each visit. It is meant to be completed by you, but if you need some help a family member/caregiver or Clinic Volunteer may help you. Remember, it is how you feel right now and not how others think you feel.

Each symptom is rated on a scale from “0 – 10”. A score of “0” means you do not have the symptom. A score of “10” means that your symptom is at its very worst. Please choose the number that describes how you feel. There are 9 different scales, one for each symptom. The last line can be used for any other problem/symptom you may have.

Example: No pain Worst Possible Pain 0 1 2 3 4 5 6 7 8 9 10

Some people have trouble understanding the words on the scales. The following words may be helpful to you: Depression: Sad or feeling “blue” Anxiety: Nervousness or restlessness Tiredness: Decreased energy level (but not necessarily sleepy) Drowsiness: Sleepiness Well-being: Overall comfort, both physical and otherwise; truthfully answering the question “How are you?”

Patient and Family Handbook – Oncology Clinic

Complementary or Alternative Therapy

If you are taking complementary or alternative therapy such as herbal treatments and other products, tell your health care team. This is important to make sure that these therapies do not interfere with your cancer treatment.

For more information about complementary therapy call the Canadian Cancer Society at 1-888-939-3333 and speak with an information specialist.

Planning your Treatment

We recommend that you bring a family member or friend with you to all of your appointments to listen and take notes.

You may need to sign consent forms. If you find the forms too confusing, please let us know.

More appointments may be needed to figure out the best treatment options and care for you and will be made on your behalf.

If you do not need treatment, you may be asked to come for a follow- up appointment.

Future Appointments

Always bring your health card to each appointment and a recent copy of your MedRec (or medication list). Your doctor and primary nurse will ask questions about your health, how you are doing and may do a physical examination. You may have other appointments within Joseph Brant.

Staff and volunteers are here to help you during any appointment. Please ask us questions and let us know your concerns.

Appointment Changes

If you need to change an appointment, call the clinic at 905-336-4103. We require at least 24 hours’ notice ahead of your appointment time.

Patient and Family Handbook – Oncology Clinic

We have long wait lists, so if you cannot make it, someone else may be able to make use of this appointment time. Refer to page 16 for more information regarding non-urgent calls. If an immediate issue arises, we recommend going to your nearest Emergency Department. Please note: Due to Clinic demands, the Healthcare Team members are unable to support unscheduled visits.

Tests and Lab Results

Tests and lab results are usually given during clinic appointments, unless you were told to call. We understand that waiting for these results is difficult, but we feel it is important to discuss them in person with your doctor.

Lab

Our lab serves hundreds of patients per day. It is located on Level 1, right next to the front doors of our Clinic. Where applicable, some patients are able to have their bloodwork done one day prior either within the Lab or within the Clinic.

Please note that this lab is only to be used for tests ordered by your JBH doctor. Tests ordered by your family doctor must be done at a community lab.

Cancer Treatments

There are 3 major ways to treat cancer:

Chemotherapy (anticancer drugs):

 Chemotherapy are drugs which kill or damage cancer cells.  Biologic therapy are drugs which kill or damage cancer cells through specific targets. Some encourage the immune system to attack cancer cells.

Radiation therapy – uses high-energy radiation rays or particles to damage or destroy cancer cells.

Surgery – removes the tumour or area with cancer.

Patient and Family Handbook – Oncology Clinic

You may need one of these treatments or a combination of them. You and your health care team will work together to develop a treatment plan that is best for you.

Cancer care is not just about treatment, there are other services that are available to help you. They are described throughout this handbook. Chemotherapy

Chemotherapy Nurses

Chemotherapy nurses are registered nurses who have specialized training to give chemotherapy. These nurses will teach you how to care for yourself while on treatment and manage chemotherapy-related side effects.

Chemotherapy Suite

The Chemotherapy Suite is the place where our patients receive chemotherapy treatment.

Treatment is different for everyone. It can last just a few minutes or take several hours. Wear comfortable clothes and bring a book or activity. The Chemotherapy Suite may be very busy and crowded. For safety reasons, please have only one family member or friend who is over the age of 16 accompany you to your appointment.

Wifi packages can be purchased online with a credit card or at the JBH Gift Shop.

Be sure to:  bring your health card

 bring your medications for the day, especially pain, diabetes and smoking cessation medications  bring a current list of your medications

 take your regular medications unless you have been told otherwise

It is highly recommended that males and females of reproductive years discuss with their Oncologist/Hematologist options regarding fertility preservations..

Patient and Family Handbook – Oncology Clinic

Retail Pharmacy

For your convenience, a Retail Pharmacy is located in the North Tower of the hospital, which may stock the medications you have been prescribed, and have expertise in cancer care medications. Goldencare Pharmacy is available right next to the North Tower entrance.

Monday to Friday: 8:30am – 7:00pm Saturday: 9:00am – 3:00pm Sunday: 10:00am – 2:00pm Closed on statutory holidays Phone: 905-639-2222

Radiation Therapy

Radiation therapy is not offered at JBH. However, we do have a Radiation Oncologist onsite once a week to see applicable patients. Arrangements will be made with Juravinski Cancer Centre for any patient requiring radiation treatment.

Clinical Trials

Clinical trials help us learn more about how well new drugs, treatments, interventions or devices work. All cancer therapies go through clinical trials before becoming the standard of care.

When you first learn that you have cancer, joining a clinical trial may not be your first option. Your primary care team will discuss your options with you – one of these may be a clinical trial.

Patient and Family Handbook – Oncology Clinic

Palliative Care

Palliative Care Physician, Social Work, Dietitian, Clinical Navigator, Spiritual Support, and Nurse Practitioner services are available for patients and families.

You and your family may have questions or concerns about:  your job and finances  talking to your family and friends about your cancer  helping young children understand what is happening  accessing available community and government resources  counselling  managing day-to-day activities  healthy eating  sexual health  coping with weight loss or changes in your appetite  the pain or symptoms associated with your cancer and its treatment  feeling worried or sad  your spiritual or religious needs  grief and death and dying  understanding the health care system and how to access necessary resources

Education and Community Resource Program information can be found in our Patient & Family Resource Room within our Clinic.

We will work with you and your family to help identify and respond to your supportive care needs. Based on your needs, you may meet one or more members of the Supportive Care team.

Patient and Family Handbook – Oncology Clinic

Privacy

At Joseph Brant Hospital we keep your health information private. We have rules on how health care providers can collect, use and share your health information. If you would like more information about your privacy rights please ask your primary care team.

You can contact the Director, Health Information Services & Chief Privacy Officer at 905-632-3737, ext. 1277

Joseph Brant Hospital Foundation

The Foundation contributes to patient care, research and education at JBH. Our donations are often used to buy equipment and support research projects. Most recently, they supported the expansion of JBH.

The Foundation is really about people. Some give their time, while others donate money. Both are important in our goal of bringing hope to patients with cancer.

The staff of the Joseph Brant Hospital Foundation are happy to meet and talk with patients and families who are interested in giving back. If you would like to learn more about the Foundation or make a donation:

Foundation office: Located on the second floor of the JBH Administrative Building, adjacent to JBH,

across from the information desk Website: www.jbhfoundation.ca

Phone: 905-336-6499

Patient and Family Handbook – Oncology Clinic

Healthcare Team Members

Name Phone

Patient and Family Handbook – Oncology Clinic

Questions / Notes

Patient and Family Handbook – Oncology Clinic

Questions / Notes

Patient and Family Handbook – Oncology Clinic

Quick Reference Page

Your type of cancer:

Oncologist:

Primary Nurse:

Your chart number

When to call the Oncology at 905-336-4103

Non-Urgent Messages Appointment bookings or changes, prescription refills, test results and general questions will be directed to the appropriate team member by our office staff. We will return your call within 24-48 hours.

Urgent Problems If you are experiencing any of the following urgent issues, please contact your family doctor or go directly to the nearest Emergency Department or Urgent Care Centre.

 Fever of 38.0 C (100.0 F) or higher

 Bleeding

 Difficulty breathing

 Chills

 Severe Vomiting

 Pain *If you become very short of breath or develop severe chest pain, call 911 or go directly to the nearest Emergency Department.

Patient and Family Handbook – Oncology Clinic

Oncology Clinic Joseph Brant Hospital 1245 Lakeshore Road Burlington, Ontario L7S 0A2 905-336-4103 www.josephbranthospital.ca